When health policy is ill

The needs of people with Multiple Sclerosis are often not met by health systems designed to provide only short-term care.

Today is World MS Day, and it is a good time to consider how health policy meets the needs of those with this chronic and complex illness.

Multiple Sclerosis (MS) isn’t just an illness of the body; it also highlights weaknesses in health policy and poses a socio-economic policy challenge.

Health policy often struggles to meet the complex needs of those with chronic illnesses. Our health systems are designed for illnesses where the care is relatively short-term, or the disease can be readily managed.

MS is a chronic and potentially debilitating autoimmune disease with no known cause and for which there is no known cure. The disease is not inherited, nor is it contagious. Worldwide, 22.5 million people have MS; in Australia, around 1,000 people are diagnosed each year, almost four people each working day.

Unfortunately, MS has an age and gender component. The majority of diagnoses occur in the 20-40 year age bracket, with females accounting for 75 per cent of cases. In addition, MS has a geographic component. The incidence of MS increases the further away you are from the equator, meaning that New South Wales, Victoria and Tasmania are disproportionately affected.

Worryingly, more people are being diagnosed with MS, although it is not yet clear whether this is because diagnostic tools are improving or the incidence of MS itself is increasing. In either case, it represents a growing challenge for the health system.

On the policy front, there is some cause for hope arising from the Federal Government’s commitment to its flagship Medical Research Future Fund in the latest budget.

The fund offers renewed opportunities for research, which will receive $400 million over four years, starting with $20 million in 2015-16 and increasing to $500 million in 2019-2020. While the original intention was to grow the fund to become the world’s largest, at $20 billion by 2019-2020, this is now expected to occur in 2022-23.

Despite this advance, clarification is required about how the fund will operate, and its ability to start making targeted research grants to areas with likely high yield returns. Given the recent scientific breakthroughs made by MS Research Australia, as well the organisations’ participation in the International Progressive MS Alliance, MS has the potential to be one of the beneficiaries from the new fund.

The changes in April to the Pharmaceutical Benefits Scheme (PBS) will also relieve some of the financial pressure for some sufferers. Lemtrada, a disease modifying therapy (DMT) for the treatment of Relapsing Remitting Multiple Sclerosis, which is the most common form of MS, has been added to the PBS. This brings the total DMTs for MS to more than 10. This is significant, as without the PBS, these therapies cost in the order of $30,000 per year and would remain out of reach for the majority of Australians.

Investment in technology is also welcome. The budget heralded a $33.7 million Integrated Plan for Carer Support Services, with an investment of $10.9 million in the first year to set up a National Carer Gateway, recognising the importance of carers in managing MS.

There is also $485 million allocated over four years for a revamped electronic medical records system, facilitating communication between the multiple specialists required to manage MS.

Despite these gains, there remains much to be done in policy terms to help alleviate the impact of this unpredictable disease. Those diagnosed with MS – most of whom are young women – are likely to live with the social and economic hardships it brings for decades.

They require ongoing support, including regular visits to their GP. Maintaining the Medicare rebate freeze, as proposed in the Budget, will disproportionately impact those who frequently use GP services. If the freeze remains in place, measures will be required to ensure those with MS are not disproportionately impacted.

While the addition of Lemtrada to the PBS is welcome, it is also necessary to provide access to affordable complementary medications to manage the symptoms and complications MS presents. More can be done to expand and streamline the PBS to enable those with MS to access the medicines required to maintain their quality of life, and potentially maintain their participation in the workplace.

Further funding is also required for specialist early intervention and support services. This is because MS often manifests with invisible and varied symptoms that lead to significant functional impairment. Early intervention has the possibility of reducing the progression of the disease.

MS is chronic, debilitating, and progressive. There is no cure, and management of the disease is expensive and lifelong. Further appropriate policy settings and budget arrangements are required to address this long-term challenge.

On World MS Day, we should both welcome the gains to be made through the funded changes to policy flagged in the budget while setting our sights on further policy changes to improve the lives of those living with MS.